🎧 New #EUPatientspodcast episode out! In this episode, we dive into a discussion with members of ZOPS (Patient Organisations Association of Slovenia) about the role of Slovenian patient organisations in amplifying the voices of patients. ▶️ Listen now: bit.ly/4dIEhq6

🗓️Yesterday, Julie Spony, Policy Officer at EPF, attended a webinar on Summary Information for Patients, organised by HTAi In light of the #EUHTARegulation, she remarked that accessible & clear information is essential for empowering patients to meaningfully engage in #HTA!

📢 Have you faced a situation where #antibiotics didn't work? For the European Antibiotic Awareness Day on 18 November, we're calling for #patient stories on the impacts of #AMR. Share your story with us ➡️ bit.ly/3zZlaJu #AntimicrobialResistance #PatientVoice

Join X-dialogue on Tuesday! 🌟Can people become community leaders in tackling the global challenge of AMR? 🌟 We have a panel of 20 experts joining the conversation! 🌟 Both panel experts and the public are encouraged to answer! 🌟 ReAct is pleased to partner with

Are we doing enough to include the voice of patients in policymaking for #AntimicrobialResistance? Join our final webinar in partnership with European Patients' Forum as we explore this topic with policy experts, patient groups & survivors Register👉eu-patient.eu/amr-info-point…

🎥 OUT NOW – Raise your voice for Duchenne: the documentary. This inspiring documentary portrays the powerful stories of three individuals from different corners of the world, living with Duchenne muscular dystrophy (DMD). Please share 🙌 #wdad2024 youtube.com/watch?v=Vdv6vq…

Ovet the weekend: in-person session of the ALTEMS Università Cattolica's International Patient Advocacy Management Master’s programme. Anca Toma shared insights from our work at EPF.

🚨 News alert! The European Patients' Forum, OPEN Health, and EAMDA are launching a joint initiative to improve #HTA in Europe, focusing on patients with Spinal Muscular Atrophy (SMA). 🗞️Read the press release: bit.ly/4gkTqjc

Join us 🖥️ at #ENTERO2024! A first-of-its-kind conference exploring the topic of early-age onset digestive cancers, covering the latest research, treatment modalities, challenges, and the unique perspectives of patients, survivors, and caregivers. 👉🏽 entero.digestivecancers.eu/en/

Will you be joining us for our X dialogue today, 10 Sept at 4pm CEST co-hosted by ReAct - Action on Antibiotic Resistance and The AMR Narrative All are welcome! To take part, use the hashtag👉#theAMRnarrative

How can #PatientRegistries improve treatment and care? Find the answer and gain insights from experts at International Niemann-Pick Disease Registry, International Gaucher Alliance and EURORDIS-Rare Diseases Europe during our live discussion in February 2023. 👉 bit.ly/3XT4TMl #DSL5 #HealthData #patients

For those joining today's #theAMRnarrative X dialogue in the next few minutes at 4 pm CEST, more about how to participate can be read here: amrnarrative.org/event/can-peop… Don't forget the hashtag! #⃣

T1: Patient involvement in policy-making & comms campaigns is key to ensure these meet their needs. Patient orgs can disseminate info/spread best practices. Patients’ awareness of #AMR can help HCPs reduce #antibiotics prescription & improve patient safety. #theAMRnarrative

T2: Set & implement ambitious targets; Commit to a #OneHealth approach; Promote solidarity & collaboration at global level; Most importantly, prioritise community & patient engagement! Empowering patients to advocate and raise awareness is key to address #AMR. #theAMRnarrative

T3: Using simpler terms & avoiding obscure acronyms while explaining how #AMR impacts daily life and access to safe care. Many COVID-related messages (#MaskUp, #Washyourhands, #Stayhomewhensick) are true against any infection; why did we stop using them? #theAMRnarrative

T4: Empowering patients and carers to tell their stories makes #AMR more real for people. Few people understand what the real impacts of AMR are & how they could be affected. 📢 Patient stories help raise awareness and motivate all stakeholders to act. #theAMRNarrative

CT: #Useyourvoice! Use antibiotics only when needed, tell your family & friends about #AMR, talk to your GP, become active on social media, ask your local health services about AMR actions, write a letter to your MP, & find allies. Everyone can make a difference! #TheAMRNarrative

Today, we joined an interactive conversation on #AntimicrobialResistance and advocacy. If you missed it, you can find the entire thread using #theAMRnarrative. To learn more about #AMR and its impact on #patients, visit our page ➡️ eu-patient.eu/amr-info-point/

🔜 Happening today: our 3⃣rd and last webinar with The AMR Narrative. 🕒3pm CEST This webinar will feature #AMR patient survivors and experts, and will delve into why #PatientVoices matter and how to get involved in policymaking. Save your spot ➡️ bit.ly/3yusqwr

Let’s revisit DataSavesLives' main events from the past 5️⃣ years: In March 2023, they hosted the 2nd Ambassador Training Bootcamp in Portugal. Participants discussed the role of patient groups in the design & use of #AI in #healthcare. 👇 #DSL5 bit.ly/4e4qQky